Tag: SevereME

Someone living with ME used the analogy that they have a battery which
charges to 30 – 40%.

I have a battery which charges to 0.5 – 3%.
If that was the case with your mobile phone and you took it outside with you,
you could, for example, speak to your Mum quite clearly and intelligibly for
several minutes, when the battery would suddenly cut out…

You would then return home and be unable to communicate whilst the battery recharged. If it was your smartphone, absolutely all other applications and functions would also be impossible.

Unfortunately, no matter how long you wait for your faulty battery to recharge it will only ever reach 0.5 – 3% So it is with the fluctuating and variable condition of very Severe Myalgic Encephalomyelitis and hence the intermittent ability to be active and to communicate verbally.

Sometimes I can speak well and very competently for a few minutes, then my
energy is depleted and I’m unable to speak at all, often unable to move nor to
carry out any activity whatsoever.

Meanwhile your poor mother (in her 9th decade) doesn’t hear from her
daughter for months on end. Nor is she able to visit her. And so it is with all
relationships formerly enjoyed. The ‘conversation’ will never be completed.

Although imposed by the condition of Severe ME, talking slowly, quietly or in
any other way modifying your communication does nothing to help with the
insurmountable problem of the battery failing after several minutes.

Of note, and of great significance, is the fact that the most basic and
essential activities of living : control of heart-rate, respiration, ingestion,
digestion, elimination, thermoregulation, and maintenance of homeostasis
take a minimum of 40% battery charge.

Like this:

A year ago a fellow ME sufferer posted this:
“I really feel like I give up… I cannot continue to see doctors. I have lost my career, my friends, my ability to drive, to grocery shop, to concentrate, but most importantly my health. I believe I will stop eating and just cease.

I no longer have anyone that can help me and I am about to lose my home. I have been housebound for a year and am not eligible for any assistance. I live in a second story apartment. I can barely care for myself let alone my poor cat.

He is suffering as much as I am now. He is 14 so I know if I call a shelter come take him they will kill him. I am devastated by this illness. In addition I have severe autonomic dysfunction and peripheral nervous system damage.

I ask God to please let me come home every night. My parents have helped me to the best of their ability but they are in their 70’s and have health issues of their own. I was a medical professional for 16 years. I took care of people with kindness and empathy.

I have been treated by physicians as garbage and just told to “exercise more”. I was a marathon runner, an athletic, a friend a daughter. Now I am nothing.”

She had vocal function damage and was unable to speak. 172 fellow ME sufferers and I (some of us also very severely affected) tried to support her online (the only way in which we can) to access essential services.

Today, I have heard that she is gone.
“On Tuesday August 7, 2018, after a long illness, she left us at the young age of 42.”

💙💜💚

This is needless suffering and loss and horrifying to me.
We must keep on fighting for our right to equity of medical and social care. Even if we cannot advocate, we can bear witness.

💙💜💚

Comments From The Community

This post was first published publicly on Facebook and received over 400 responses, below are just some of the comments received:

Cheri: This medical abuse has to stop, how many others are dying right now without any support? I feel anger that we live in a society that has lost its empathy and compassion. May she rest in peace

Matthew: One more off the books, their cull is sickeningly efficient, RIP

Brenda: U.S. offers no home health service for M.E., so that makes sense.

Sharon: This is so heartbreaking to read, so very sad and my heart goes out to you and her family. You can hear her desperation in her words and sadly it we all understand only too well how she was feeling.

We can raise awareness and campaign but only so much as our health allows us to. Until mindsets change and we are recognised and given the help support and understanding we so desperately need then very sadly this will become all too common.

I won’t stop raising awareness and campaigning as much as I can but it’s limited. What we could really do with is an MP or public figure, (maybe one who would know someone who suffers), to champion this and to bring it to people’s attention. I doubt we will see that any time soon though 😢 x

In response to Sharon: We have Carol Monaghan SMP who spoke at the Millions Missing Protest in Edinburgh, Scotland, on May 12th this year and who brought the debate on ME to the UK Parliament on June 21, 2018.

Joanne: There is such an injustice with this illness one day it’ll will be payback time and justice will prevail. We will fight on in your honour! RIP Anita i am so very sorry for your suffering xxx

Pamela: So sad to hear. Unfortunately this is reality, we lose so so much to this illness and for those who do have good days, that’s wot most people in our lives only see, they don’t see us at our worst xx

Dawn: This should not be happening….

Ashley: My heart has shattered reading this. May she rest peacefully in eternity. We need to fight for an autopsy for this woman. Another life taken by M.E. way too soon and they’ll write the COD as something unimportant, like always.

Elly: Heart breaking but thank you for sharing as we know it’s important. Nobody should live or die like this it’s so angering as well heart breaking.
I hope you’re friend can now rest in peace 💜 Big hugs xxx

Angie: This is affecting me profoundly, I could have written much of what she says. I’m completely alone bedbound etc etc…. And I know intimately that space of no end in sight and simply not wanting to be here. My heart and love goes out to her, and I’m absolutely certain she is now at peace and flying free.

Angela: Absolutely heartbreaking and unacceptable xxx

Molly: Oh no that is so sad. But its so true you can be treated as if your putting it on. I suffer from Fibramyalgia and my designated GP doesnt accept the disease so so sad xxc

Chantal: this breaks my heart … and understand how she gave up hope, I just recently was told by my control doctor (who checks if I should go back to work) to stop playing a victim and how it’s all in my head .. and you don’t even have the energy to get angry …(I have ME/CFS and fibromyalgia)

Jenni: Medical abuse at it’s finest.

Jane: This is so very tragic, no matter what an autopsy or cause of death. This poor woman died of neglect, ignorance and complete lack of compassion. May she now Rest in Peace and love.

Robin: What makes me angry is lack of research. This is the 21st century from what I read doctors still don’t understand ME. According to Nancy Klimas research into male pattern baldness gets six times more federal funding in the US than research into ME/CFS. That is fucking crazy. It makes me angry. Thank you Anita for making me aware of this injustices.

Di: This is so heartbreakingly tragic

Julia: Until things change, we will see more of these stories, and more frequently as our numbers seem to be increasing. Very sad for this lady, and her family. May she now be at peace.

Shellie: Awful, absolutely awful, so very sorry that anyone should suffer like this. May she rest in peace 😢xxx

Char: I’m so sorry for your loss, Anita. Such a heartbreaking story, one that keeps repeating itself in our community unfortunately and unnecessarily. Horrible neglect by inexcusable ignorance in this day and age. Sending you hugs

Trish: This is so very sad. How do we even begin to process this. 😘 sending hugs Anita. Xx

Michele: Dear God! How truly terrible. May she rest in gentle peace now❤️🌿

Loylia: This is criminal…when will it all end..so so very sad.☹

Darci: That’s awful. The poor woman. I’m so sorry. I hope you and her family are coping ok. She’s not suffering anymore but it should never have come to this. Sending a hug.

Gail: So awful, so sad and totally unnecessary. We need people to listen!

Daphne: This stands out as one of the saddest cases, though undoubtedly and inexcusably there will be others equally desperate, and we have all heard of some. With her parents permission this letter ought to be seen right at the top of Government. Read out loud in Parliament to honour a voice that wasn’t ‘allowed’ to be heard. RIP young lady and may your soul fly freely.

Toki: This is heartbreaking, from the post I know who she was and I’m distraught. We will not let the archaic treatment of our disease continue to be just silently accepted and we’ll carry on fighting xxx

Adrian: That’s awful. What kind of society do we live in?

Beth: Very sad these people who are suffering ME. Etc are amazing,
Please never give up.

Patricia: Devastating. And a disgrace. There is absolutely no excuse for sick people not to be treated with care and empathy. Intelligent doctors LISTEN and LEARN from their patients

Debbie: Absolutely disgraceful!! So sad 😞 I hope she rip 💕

Brenda: I tweeted a screenshot of this to some government agencies now. Please re-tweet.

Rosemary: This is tragic beyond words. It is so wrong that this has happened. X

Lesley: Very sad at such a young age what is worse she was on her own. Is there no outreach any more by kindhearted people if not social services. We are saying it it is terrible. I have to think what I can do to advocate or help individuals like her.. (then later she added) I am going to speak to one of the officials from an ME organisation. The phone call is already arranged.

Sarah: This is exactly how I’ve felt for so long now its my normal.
Its a constant battle to carry on especially during each year’s fight to get benefits and healthcare.
At least she isn’t suffering anymore…💜

Julie: I am so very sad and sorry to hear this tragic story – one that is becoming too common 😢😢😢
Lots of love to YOU beautiful girl xxxx

Ros: Such dreadfull lack of care!!!

Jo: Disgraceful – I’ve shared this post

Janet: This post has deeply touched me, I think i saw a bit of myself in this lady in regards to have being a health care worker myself. I am both angry and sad at how she was was just abandoned. How can someone be left this way with no practical help , support , compassion or empathy.? How can we as a community help? Was there any services she had access to but didn’t know about? So many questions. I am going to look in to what is available in my own area regarding voluntary services, charities, local churches, and animal care as a cat lover myself, then see that this information goes to the right people. The problem with severe M.E is people become invisible to their community and they need to be known about, they need to have visible to themselves what is available not matter how small. RIP dear lady your story shouldn’t stop here.😥

Pat in response to Janet: This community on here helped all we could and offered advice where to get help and she tried many of them to no avail, sadly.
I agree something needs to be done.

Emma: I can’t bare the thought that she suffered so long just waiting…. negligence at it’s highest level possible. May she be at peace. 💔

Dorothy: That is so sad and should never have been allowed to happen

Chris: I get so angry with stories like these… Another life lost to M.E and glaring holes in support, care and infrastructure which let suffers fall through… Just after briefly reading this post it’s clear her life was miserable towards the end and death was an eventual release… Noone in the 21st century and living in a modern society should live and be left to die like this… Heartbreaking…. R.I.P x

Miriam: That is so very, very sad and could happen to so many people who do not have someone determined to fight for them, and even then…

Sarah: I have been feeling this same way lately, for many of the same reasons. Contemplating giving up as well. Some have shown me compassion lately but it’s still a struggle to hold on to that.

Pat: I am so saddened and upset by this. I remember this lady. She was calling out for help but no one was there.

Noreen: this is so heartbreaking and inhumane. I’m so sorry. Sorry for that poor lady, sorry that we live in a society and world where such suffering is not only allowed but is made.
What have we become?? 😢
May she Rest In Peace 💔💙

My Comment: Borrowing the words of Khalid Al Ameri on August 10th in his indictment of another human rights abuse:

“We need to continue to speak up about these things.
We need to continue to call out the wrongs when we see them.
Because, if we don’t ‘see’ anything, and we’re silent, the message we are sending out to our communities is
‘Things like this are okay’ – when clearly they are not.
And, if we let them go, we are [complicit].
In this day, today, on our watch, that CANNOT happen.”

Be that the gaslighting of 250,000 ME sufferers by the GMC, or the death of yet another young woman through neglect.

Like this:

Due to the unremitting gaslighting which I experience from social-care providers, health-care providers, disability benefits assessors, care-package providers and even 3 ME organisations which should be closer to the heart of very Severe ME needs, I am, with sadness, changing my Facebook cover photo by way of protest.

I have endured 39 years of ‘gaslighting’ (look it up/ see below) and now, aged 61 years, I demand my right to some life beyond :
>>eat, toilet, deal with overwhelming burden of bureaucratic harassment, sleep. Repeat<<

From today, I will be using this quotation to head every correspondence with said agencies.
They may continue to refuse to hear it. I shall continue to say:

“I am here. This is the reality of my lived-life.”

– until my last breath.

Myalgic Encephalomyelitis is a debilitating neurological disease which has been recognised by the World Health Organisation (WHO) since 1969…

Result

My first use of this letterhead, in an email and follow-up hardcopy letter, has resulted in a respectful, appropriate and prompt response from the service to which I wrote.

Definition of Gaslighting

“Gaslighting is a tactic in which a person or entity, in order to gain more power, makes a victim question their reality. It works much better than you may think. Anyone is susceptible to gaslighting, and it is a common technique of abusers, dictators,narcissists, and cult leaders.

“Gaslighting is a malicious and hidden form of mental and emotional abuse, designed to plant seeds of self-doubt and alter your perception of reality. Like all abuse, it’s based on the need for power, control, or concealment.”
(Psychology Today)